Support Groups & Resources

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Support Groups:

Resources from Global Genes (rare disease advocacy group):

Other Blogs/vlogs:

Recipe Ideas & Resources for understanding a puree diet:

  • COMING SOON! My recommended recipes to get you through the torture of a liquid and soft food diet
  • Guide for puree diet

Get to Know Your New Joints: (Joint Manufacturer Websites)

My Surgeon:

 Dr. Wolford’s website has a wealth of information on the disease and surgery. (There are many great surgeons. I only link to Dr. Wolford because he was my surgeon and I can only speak to my own experience- which was wonderful!)

Peer Reviewed Papers I Found Useful:

You Can Do Your Own Research:

The fact that you are here tells me you are invested in your health and want to learn all you can about this disease/surgery and that is great! If you wish to dive deeper I suggest reading some medical research papers. They can be searched through:

PubMed.com – is an online library of medical research.

Google Scholar– is a free search engine that lets users look for both physical and digital copies of articles. It searches a wide variety of sources, for peer-reviewed articles.

Tips for Reading Research Papers:

  • Typically it is easiest to focus on the abstract.
  • The upper right hand corner will sometimes have links to full articles for free.
  • Copying and pasting the Title and Author into a search engine will sometimes provide a link to a free version.
  • Often an email to the author will result in them sending you the pdf for free.